Go To Guide for New or Expectant Parents of a Child
with a More Severe Form of OI.
with a More Severe Form of OI.
First, you are NOT alone.
Visit OIF.org. You will find tons of real information from the OI Foundation about what OI is, where to go for the best care, and how to connect with other parents from around the world...yes, the world! You may feel like you're alone right now, but there are many of us who have been in your shoes. Connect with us on Facebook...you will quickly learn that there are others who know how you feel and live closer to you than you think.
Feel free to go back to the beginning of my blog and take a look around. I started writing after finding out about Isaiah's OI at my 20 week anatomy scan, where maybe you found out....you are possibly going to relate.
Please, celebrate your baby. I experienced a roller coater of emotions throughout the second half of my pregnancy because my son's diagnosis kept changing. At first, it was OI type III, then the lethal form, type II, then maybe type III again, or even type IV. I questioned if we should prepare for our son.
I am from the US, and here many of us have a tradition to celebrate our babies with a baby shower for an expectant mother. This can be overwhelming for a mom expecting any baby, but especially a baby with OI. They grow at a slower rate, they are fragile, they may have bowed legs and/or arms...I was overwhelmed wondering what would work for Isaiah.
I chatted with some other parents, and we've compiled a list of our "must haves" for our babies with severe OI. I am going to include links to products in the links below, but I want to note that I am not affiliated with these companies in any way.
Click the links below to see suggestions for each area of your baby's life.
Clothing
Feeding
Sleeping/Swaddling
Other Needs
Bathing
Traveling
Playing- new!
Splinting a suspected Fracture- (slowly rolling out this section thanks to other wonderful OI moms!)
More to come!
Updated: January 7, 2016
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